Media Brief
February 24, 2010 by admin
Filed under Information from NOVA
NOVA Media Brief 2010
NOVA and the work we do. In 2010 NOVA is asking each family we have helped to share their story with their local media. By sharing your personal story with your local newspaper, radio station or television station you can reach tens of thousands of individuals with the message of NOVA.
Introduction:
“Since 1996, NOVA has been providing support to all individuals with hemangioma, vascular malformations and related medical conditions. The dedication of an all volunteer leadership team and medical & scientific professional advisors has been the foundation of NOVA.
NOVA has successfully influenced the medical community to revise an 85 year old attitude that vascular anomalies were simple birthmarks- better left untreated. By educating patients and their families to the classification, diagnosis and treatment of vascular anomalies individuals have been empowered to not accept the status quo and to work with their pediatricians and primary care doctors to find treatment centers to manage their medical care.
NOVA has joined with professional organizations like the International Society for the Study of Vascular Anomalies, the Coalition of Skin Disorders and the Genetic Alliance to raise awareness for these common yet misunderstood disorders.
NOVA has embraced every individual that has needed support, assistance and information in finding medical care that many had thought did not exist.”
National Organization of Vascular Anomalies
Personalization:
1. Share your story: example
We were one of those families that NOVA helped. In 2004 our daughter was born with what we thought was a small red birthmark on her face. We were told in the hospital that it would be gone by the time she was 5 and not to worry about it. Within the first few weeks the birthmark had grown so large it was closing her eye and had several small wounds on it. Despite the obvious pain our child was in and the bleeding that occurred from each wound on our daughter’s face our doctors told us not to worry and that it would get a bit worse but eventually go away. After weeks of thinking our daughter had a simple birthmark they finally used a new word, “hemangioma”. I did not know what a hemangioma was but as soon as I got home I sat at my computer and looked it up. As the images of other children with hemangioma scrolled across the screen I was shocked. My child did not have a mere birthmark that would go away at age 5, rather she had a tumor! A tumor that would grow for at least a year and one that was associated with several complications. On the website that provided me with all this information was an email address, I wrote to the email address and much to my surprise I received an answer the next morning.
The website was for NOVA- the national organization of vascular anomalies, www.novanews.org. The email that replied to my request for help offered a private telephone number to call. Later that morning I was speaking with NOVA’s Karla Hall. Karla and NOVA provided me with information on hemangioma and an associated syndrome known as PHACE. I was given assistance in finding a doctor that could help treat my daughter. Within one week I was at Cincinnati Children’s Hospital with my child. We had testing and started treatment right away. Within a few days my daughter’s eye was opening, the wounds were healing and we were on our way to making sure our child was cared for. My daughter does have PHACE and will need care for years as a result of it. I can not even imagine what would have happened if I had not found NOVA.
Not only did NOVA provide me with information on doctors but they were able to connect me with other families through social networking sites like facebook, message boards and blog sites. The families that connect on these sites share information that helps us simply get through the day.
National Organization of Vascular Anomalies
Last year NOVA hosted a conference in Houston Texas for PHACE families and we were able to attend. We were able to meet many of the families that we had been networking with. We were able to speak with the leading doctors in the field. We were able to enroll our children in some research that will eventually lead to better diagnosis and treatment for PHACE kids.
2. Include Photos of the child- a picture says a thousand words. This is a visible disease let the photos speak for you.
Conclusion: Bring it back to NOVA & tie it to your community.
Each year approximately 40,000 children will be diagnosed with a significant vascular anomaly. Yet according to research from clinics treating vascular anomalies about 50% will be misdiagnosed and 35% of these children will receive improper treatment. My child was one of the 35% that received improper or no treatment. It could have led to life threatening complications.
At the “list the name of your local hospital”, _________ children are born each year. Many of these children will be born with a vascular anomly like my child. Early and accurate diagnosis and treatment is so important. Please share my story with your readers and how NOVA can help families find the medical care and support they need.
Provide Contact information for you.
Provide Contact information for NOVA
National Organization of Vascular Anomalies
PO Box 38216
Greensboro, NC 27438-8216
Karla Hall, Executive Director, khall@mail.novanews.org
John DuBiel, President, jdubiel@aol.com
Denise Adams, MD, Medical Director.
NOVA is a 501c3a organization.
National Organization of Vascular Anomalies
